The A-PATH HD Study
Research type
Research Study
Full title
The assessment of apathy and identification of different profiles in individuals with pre-manifest or early stage Huntington’s disease
IRAS ID
318236
Contact name
Roger Barker
Contact email
Sponsor organisation
Cambridge University Hospitals NHS Foundation Trust & University of Cambridge
Duration of Study in the UK
2 years, 9 months, 22 days
Research summary
Huntington’s disease is a neurological condition which has motor, cognitive, psychiatric, and behavioural symptoms. Apathy is considered to be the most common feature in the psychiatric symptoms. Studies suggest that apathy in this disease is related with disease progression, cognitive dysfunction, impaired decision making, and reduced quality of life. But how it is caused and its profiles in Huntington’s disease have not been understood. The current definitions of apathy suggest it is more than a reduction of self-generated actions, and actually composed of varied elements spanning from cognitive, emotional, executive, behavioural and social domains. The apathy scales currently used for evaluation in Huntington’s disease look at apathy as a whole global phenomenon and does not consider the different subtypes. The scales we are interested to test look at different subtypes as per the revised diagnostic criteria, covering all the domains of apathy. Further, they both have scales for the patient as well as the companion, making them a potentially suitable way to assess the presence of multi-dimensional apathy in HD. Thus, understanding in-depth the way it affects patients, what are the different symptoms prevalent in early stages of the disease and its effect on the quality of life of the patient and the carer, would help us get better insight into recognising and treating apathy in Huntington’s disease. Pre-manifest and early manifest patients and their companions would be eligible for the study. The study will mainly take place at the Brain Repair Centre, but most of the assessments can also be completed by the patients at home. The total time for the assessments would be about an hour and no follow-up will be necessary.
REC name
South Central - Berkshire B Research Ethics Committee
REC reference
22/SC/0287
Date of REC Opinion
8 Sep 2022
REC opinion
Further Information Favourable Opinion